Jo Milne: A diary of firsts and lasts

Since the world watched her hear for the first time, Jo Milne has been on a journey into sound, all the while knowing her world is getting darker by the day. During Deaf Awareness Week, she reflects on her experiences and calls for some action.

Posted on 03/05/2016

Jo as a child, with her 1970s style ‘robot’ hearing aid.

Imagine the precious voices of your parents, the laughter of a newborn baby, the memory of your song… and your loved one whispering, “I love you.”

Now imagine watching the world go by like a silent film: people’s lips moving without sound, raucous laughter sounding dull, muted fireworks firing across the Thames on New Year’s Eve – hard to comprehend isn’t it? To be deaf?

We might not hear but we experience sounds differently. I would feel the vibrato of my grandfather laughing so hard, he’d almost shake and I’d feel the happiest little girl alive.

I’d study his creased watery eyes and pink rosy cheeks and the way he gently held my hand; I just knew he loved me. To this day, a deep belly laugh reminds me of him. So yes, I do experience emotions and memories without sound.

“We’re also happy to be Deaf, we simply wouldn’t be us if we weren’t.” That is what I’ve always felt. As a child, growing up in the 70s with my loving family, my deafness may have set me apart, but I never felt isolated by it. My wonderful Mam made sure of that.

From the age of seven, at her insistence, I went to a mainstream school in my home town of Gateshead. I’d never been able to hear, so I didn’t miss the voices around me. But I was still fitted with a phonic ear strapped to my chest. It amplified low sounds so it was a comfort to have something, even if it became the fuel for cruel jibes from bullies who called me ‘robot’.

By the time I reached 11, deaf children didn’t, thankfully, need the added stigma of wearing equipment which may as well have been a sign that says ‘DEAF’. Times were changing but I knew from an early age, I had to put up a fight. I had some previous. My countless letters to the BBC to request subtitles on Grange Hill were answered after I’d already moved on to a new favourite programme.

Losing the ‘robot ear’ to wearing discreet behind-the-ear hearing aids meant I finally looked like everyone else. Unbeknown to me though, without something signalling my deafness, people mistook me for ignorant when I didn’t answer or realise they were talking to me. It wasn’t my fault their calls of “Excuse me” escaped my ears. So the sighs, head-shaking and mute insults became a way of life.

When I was a teenager, I’d be first up on the dancefloor, moving in time to the vibrations that pulsed through my feet. No one would know any different, I was just like any other girl. I knew I wasn’t though. I’m deaf but felt proud because my deafness defined who I was.

There was nothing I felt that I could not do; no mountain I couldn’t climb. My deafness never held me back from experiencing everything that life had to offer. Everyone adapted in my close-knit circle of family and friends, they didn’t realise it, but they automatically became deaf aware.

“My countless letters to the BBC to request subtitles on Grange Hill were answered after I’d already moved on to a new favourite programme.”

The small things, sometimes subconsciously, became second nature but made all the difference to me… to subtly use a facial expression to let me know someone was talking behind me or softly touch my arm to get my attention.

When I was diagnosed, my Mam apparently felt very lost and alone. If we had our time again, as a family we would have all learned to sign as well as encouraging speech to promote bilingual education and communication.

We all take our individual paths in life and I love to see proud and confident Deaf people acting as role models so that the hearing want to learn BSL, and some peers are equipped with speech too; an instant bridging of both the deaf and hearing worlds.

The Deaf community gives us the chance to access a rich culture and heritage and a good one at that; the capital D in Deaf tends to identify full members of the Deaf community who communicate almost exclusively with sign language. The lower case ‘d’ in deaf tends to signal those who mix well in the hearing world and communicate by lipreading.

It is only when we stand on the brink of a loss that we really learn to cherish what others accept unthinkingly. I never felt burdened by my deafness and chose the route of a cochlear implant because I’m losing my sight too, due to Usher Syndrome.

I’m determined though, that I will learn to live with the light dimming from me and I hope this Deaf Awareness Week stands out from the rest so our government finally listens to previously ignored pleas to make BSL a compulsory language on our national curriculum, ahead of French and German.

I strongly believe every D/deaf person has the right to communicate in their preferred language as we’re all different. Surely that’s just a simple human right?

The cries of joy when video clips of signing Santas and Tinkerbells at Disneyworld go viral; a deaf child’s face lighting up like a Christmas tree… why is it so hard for the government to want to achieve this for the 10 million British citizens with a hearing loss – 900,000 of us profoundly deaf and 45,000 of whom are children.

When we can’t live our lives like everyone else – that’s when we feel different and isolated.

Awareness has always been the key. It’s all about being present in the moment to absorb life around us – and you get to gain a greater understanding of an equal world.

Gateshead-born author of Breaking the Silence, ambassador and campaigner. Jo has Usher Syndrome, a rare genetic condition causing deafness then the onset of a retinal disease leading to gradual loss of vision. Those who know Jo describe her to be inspiring as she continues to wring the joy out of life. @jomilne10